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Living beyond expectations

Kevin O'Donnell, 38, of Westford, left, who had a double-lung transplant a year ago, works out under the watchful eye of his trainer Kevin Driscoll of Chelmsford. SUN/David H. Brow

WESTFORD -- When Kevin O'Donnell was born in 1979, the average life expectancy for someone with cystic fibrosis was only about 16 years.

At 38, Kevin is at the current average and aiming for a much longer life, aided by a double lung transplant one year ago.

"Everybody out there should be an organ donor," Kevin said. "Whether or not you think you can make a difference, somebody out there is depending on you."

His wife, Laura O'Donnell, said the decision to seek a transplant has been "well worth it."

Kevin was born with the telltale bowel obstruction common among those with the hereditary disease, but the diagnosis was a shock for his family. He is the only known member of his family to hit the genetic lottery and end up with the disease.

Cystic fibrosis causes a thick, sticky mucus that obstructs airways, damages the lungs and other organs, and makes sufferers more prone to serious infections.

Kevin was in the hospital for the first four months of his life and on multiple other occasions up until he was about 3 years old. But he was otherwise relatively healthy for most of his childhood.

"I tried to make it as normal as possible I guess," he said. "I played sports as a kid up through high school, and I even played flag football through college. I had girlfriends. I hung out with my buddies."

Once a year, beginning in the sixth grade, Kevin had to go to Boston Children's Hospital for a "clean-out," where he would receive intravenous antibiotics to take care of any infections.

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It wasn't until the last six years or so that Kevin's health began to decline, resulting in hospitalizations with increasing frequency.

"In the mornings, when he would get up, the first thing he would do is have a coughing fit for 15 to 20 minutes," Laura said. "He'd just cough and cough."

He would often have difficulty catching his breath doing simple things, like speaking.

He started using oxygen in 2007, just at night, to protect his heart. By 2016, he needed to be on it all the time.

O'Donnell with his wife Laura. SUN/David H. Brow

His insurance would only pay for a large, suitcase-style oxygen machine with a battery life of less than an hour, making getting around difficult. Friends and family raised the funds for a more portable machine through a GoFundMe page.

For a long time, Kevin appeared outwardly healthier than medical tests would indicate -- even when he was down to only 12 percent lung function.

Life was "pretty dismal," he said.

That was the point that he joined the transplant list, on Nov. 10, 2016. There would be three false alarms before the transplant was finally available.

The first was just a week and a half after Kevin joined the transplant list. The call came after midnight. The O'Donnells raced to Brigham & Women's Hospital. After 25 hours of waiting in the emergency room, many tests and preparation and not being able to eat, Kevin would be told the lungs were "not a go."

"It was devastating," Kevin said.

The next came on the evening of Feb. 1, 2017. The O'Donnells had just picked up Laura's sister in Boston, traveled back to Westford and ordered takeout. They had to immediately turn around and go back to the city.

Again, not a go.

The third was Aug. 8, 2017, when Kevin was supposed to drive his brother and sister-in-law home from the airport upon their return from a 10th-anniversary trip to Ireland.

The O'Donnells waited in the hospital again for hours, receiving updates now and then about the progress of the donor lungs being prepared and revived in an ex vivo machine.

Kevin O'Donnell, 38, of Westford, right, who had a double-lung transplant a year ago, works out under the watchful eye of his trainer Kevin Driscoll of Chelmsford. SUN/DAVID H. BROW

But yet again, not a go.

By the time the fourth call came late in the afternoon of Aug. 21 last year, the O'Donnells had experienced so much false hope that they didn't move as quickly as they had the previous times. Laura was at work, and Kevin took time to shower and shave his head before heading to Boston.

The hospital called again just as Kevin arrived, eager to prepare him for surgery.

Kevin doesn't remember much, because he was sedated pretty early. The surgery didn't start until late morning on Aug. 22.

Laura, waiting with family and friends, finally received word it was actually happening this time.

"Everything was going well, until it didn't," she said.

About 10 hours in, a surgeon came to tell them there were complications related to a torn suture. Kevin had lost a significant amount of blood and was in critical condition. His chest was still open and he was hooked up to an extracorporeal membrane oxygenation machine and several other machines. He had a 75 percent chance of making it through the night.

"It was devastating to hear," Laura said. "He had his new lungs and now a machine was breathing for him."

She was also worried about his mental capacity, given the amount of time doctors had him off of the heart-lung machine as they worked to stop the bleeding. Luckily, doctors found Kevin did not suffer any brain damage.

Dr. Ahmet Uluer and Nurse Practitioner Kelly Shin, part of Kevin's care team from Boston Children's Hospital, comforted Laura during the emotional stress and uncertainty.

"'Don't worry,'" Laura recalled Shin, who is from Chelmsford, telling her. "'A year from now, we'll be at Kimball's (Farm) celebrating this.'"

Kevin was placed in a medically-induced coma for 10 days, and finally left the hospital on Sept. 11. He spent another month at Spaulding Rehabilitation Hospital, finally leaving on Oct. 10, the day before his birthday.

Having lost much of his muscle mass during his coma and extended recovery, Kevin had to use a walker to get around at first. But breathing on his own was "amazing," he said.

Family and friends rallied to make changes at their home to accommodate him in his recovery, including replacing countertops, pulling up carpet and finishing floors.

Wanting to do everything possible to keep him and his new lungs healthy, Kevin signed up to work with a personal trainer at Skill of Strength in North Chelmsford in early April.

He goes to the gym three times a week to work on increasing his strength and mobility. The results have been drastic. By Memorial Day, he was getting back to playing golf.

Kevin has to take about 65 pills every day for the rest of his life: anti-rejection medications, enzymes to aid digestion every time he eats, and an anti-fungal medicine to combat an infection that caused an acute rejection in February. But he feels it's a small price to pay to get his life back.

Kevin wants to write to the donor family and start the process of connecting with them. Every time he thinks about them and the gift of life their loved one gave to him, he is overcome with emotion.

He wants to thank the family and tell them "just what a tremendous honor it is to carry on your son or daughter's lungs," he said, tears filling his eyes. "Hopefully I'm doing them justice."

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